SE-ATLAS

Mapping of Health Care Providers
for People with Rare Diseases

Interessengemeinschaft Das herzkranke Kind e.V. (IDHK)

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Description of patient organisation

Die Interessengemeinschaft Das herzkranke Kind e.V. (IDHK) wurde 1978 in Essen gegründet und hat das Ziel, herzkranken Kindern und ihren Familien zu helfen. Die Hilfe umfasst das gesundheitliche, erzieherische, berufliche und soziale Wohl der Betroffenen.

Die IDHK e.V. gehört dem im Juli 2014 gegründeten Aktionsbündnis Angeborene Herzfehler an. Das Bündnis setzt sich aus der IDHK e.V., dem Bundesverband Herzkranker Kinder e.V., der Bundesvereinigung JEMAH e.V., Fontanherzen e.V., Herzkind e.V. und der Kinderherzstiftung der Deutschen Herzstiftung e.V. zusammen. Ziel des Bündnisses ist die Verbesserung der Zusammenarbeit der Patientenorganisationen, um Kindern, Jugendlichen und Erwachsenen mit angeborenem Herzfehler sowie ihren Familien effektiver helfen zu können.

Care provisions

This support group organisation offers the following
  • Regular meetings
  • Regional associations / regional representatives
  • Newsletter / Association journal

Contact

0208 8823170
roedel@idhk.de
Website

http://www.idhk.de

Address

Ankerstraße 19e
46117 Oberhausen

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Preview of the represented diseases 2

HEC syndrome Supravalvular aortic stenosis Idiopathic pulmonary artery dilatation Anomaly of the tricuspid subvalvular apparatus Congenital complete agenesis of pericardium Non-genetic cardiac rhythm disease Congenital systemic veins anomaly Familial bicuspid aortic valve Double outlet right ventricle with subaortic or doubly committed ventricular septal defect with pulmonary stenosis Accessory mitral valve tissue Congenital unguarded mitral orifice Neuhauser anomaly Congenital Gerbode defect Absence of innominate vein Congenital cataract-hypertrophic cardiomyopathy-mitochondrial myopathy syndrome Torsade-de-pointes syndrome with short coupling interval Pulmonary artery or pulmonary branch anomaly Atrioventricular valve anomaly Dilated cardiomyopathy Dilated cardiomyopathy with ataxia Idiopathic ventricular fibrillation, non Brugada type Mitochondrial disease with hypertrophic cardiomyopathy Levocardia Accessory tricuspid valve tissue Loeffler endocarditis Congenital valvular dysplasia Autosomal dominant coarctation of aorta Fixed subaortic stenosis Familial idiopathic dilatation of the right atrium Congenital supravalvular mitral ring Kommerell diverticulum Persistent fifth aortic arch Laubry-Pezzi syndrome Persistent left superior vena cava connecting to the roof of left-sided atrium Aortic malformation Generalized congenital lipodystrophy with myopathy Aortic arch defects Congenitally uncorrected transposition of the great arteries with coarctation Atypical coarctation of aorta Rare hypertrophic cardiomyopathy Congenital aortic valve stenosis Coronary artery congenital malformation Congenital aortic valve atresia Agenesis of the superior vena cava Pleuro-pericardial cyst Conotruncal heart malformations Heterotaxia Idiopathic giant cell myocarditis Double outlet right ventricle with non-committed subpulmonary ventricular septal defect Cleft mitral valve Shone complex Congenital anomaly of the inferior vena cava Aorto-ventricular tunnel Congenitally uncorrected transposition of the great arteries Atrioventricular septal defect Histiocytoid cardiomyopathy Syndrome associated with dilated cardiomyopathy Congenital anomaly of the great veins Familial mitral valve prolapse Aorta coarctation Congenital partial agenesis of pericardium Absence of the pulmonary artery Congenital aortopulmonary window Double outlet right ventricle with subpulmonary ventricular septal defect Double outlet right ventricle with subaortic ventricular septal defect Congenital mitral valve insufficiency and/or stenosis Mitral valve agenesis Inherited arrhythmogenic cardiomyopathy Cervical aortic arch Congenital anomaly of superior vena cava Subaortic course of innominate vein Truncus arteriosus Glycogen storage disease due to muscle and heart glycogen synthase deficiency Congenital tricuspid malformation Hypertrophic cardiomyopathy due to intensive athletic training Familial restrictive cardiomyopathy Non-familial restrictive cardiomyopathy Multifocal atrial tachycardia Rare cardiac rhythm disease Lown-Ganong-Levine syndrome Congenital mitral malformation Dysphagia lusoria Cor triatriatum sinister Microcephaly-cardiomyopathy syndrome Pulmonary valve agenesis-intact ventricular septum-persistent ductus arteriosus syndrome Arterial duct anomaly Aneurysm or dilatation of ascending aorta Heart-hand syndrome, Slovenian type Congenital anomaly of the great arteries His bundle tachycardia Uhl anomaly Familial atrial fibrillation Endocardial fibroelastosis Congenital aortic valve insufficiency Double outlet right ventricle with doubly committed ventricular septal defect Straddling and/or overriding mitral valve Univentricular cardiopathy Right aortic arch Congenital anomaly of the coronary sinus Cor triatriatum dexter Cardiofaciocutaneous syndrome Hypoplastic right heart syndrome Pulmonary valve agenesis Familial dilated cardiomyopathy Brugada syndrome Left ventricular noncompaction Complete atrioventricular septal defect with ventricular hypoplasia Peripheral pulmonary stenosis Ectasia of the right atrial appendage Congenital heart block Mitral atresia Abnormal origin of right or left pulmonary artery from the aorta Glycogen storage disease due to LAMP-2 deficiency Rare congenital non-syndromic heart malformation Andersen-Tawil syndrome Infantile hypertrophic cardiomyopathy due to MRPL44 deficiency Criss-cross heart Interatrial communication Pulmonary artery hypoplasia Juxtaposition of the atrial appendages Coronary sinus stenosis Coronary sinus atresia Heart-hand syndrome type 3 Glycogen storage disease with hypertrophic cardiomyopathy Coronary arterial fistula Dextrocardia Dilated cardiomyopathy-hypergonadotropic hypogonadism syndrome Familial dilated cardiomyopathy with conduction defect due to LMNA mutation Pulmonary artery coming from patent ductus arteriosus Complete atrioventricular canal-left heart obstruction syndrome Ascending aorta anomaly Sensorineural deafness with dilated cardiomyopathy Inherited isolated arrhythmogenic cardiomyopathy Abnormal origin of the pulmonary artery Isolated congenitally uncorrected transposition of the great arteries Congenital aortic valve dysplasia Catecholaminergic polymorphic ventricular tachycardia Tetralogy of Fallot Premature closure of the arterial duct Right sided atrial isomerism Isolated right ventricular hypoplasia Atrial septal defect-atrioventricular conduction defects syndrome Discrete fibromuscular subaortic stenosis Familial isolated restrictive cardiomyopathy Progressive sensorineural hearing loss-hypertrophic cardiomyopathy syndrome Brachydactyly-long thumb syndrome Syndrome associated with hypertrophic cardiomyopathy Non-familial dilated cardiomyopathy Aneurysm of sinus of Valsalva Situs ambiguus Pulmonary atresia with ventricular septal defect Triatrial heart Jervell and Lange-Nielsen syndrome Transposition of the great arteries Univentricular heart with single atrio-ventricular valve Complete atrioventricular septal defect-tetralogy of Fallot Aortopulmonary coronary arterial course Atrial septal defect, ostium secundum type Persistent eustachian valve Atrial standstill Pulmonary atresia-intact ventricular septum syndrome Scimitar syndrome Situs inversus totalis Hypoplastic left heart syndrome Discrete fixed membranous subaortic stenosis Aortic arch interruption Rare atrial defect and interatrial communication Cirrhotic cardiomyopathy Univentricular heart Anomaly of the mitral subvalvular apparatus Fatal infantile hypertrophic cardiomyopathy due to mitochondrial complex I deficiency Unclassified cardiomyopathy Cardiac diverticulum Tricuspid atresia Coronary artery intramyocardial course Ectasia of the left atrial appendage Right inferior vena cava connecting to left-sided atrium Cardiomyopathy-cataract-hip spine disease syndrome Sino-auricular heart block Congenital pericardium anomaly X-linked intellectual disability-cardiomegaly-congestive heart failure syndrome Tricuspid valve agenesis Valvular pulmonary stenosis Double-orifice mitral valve Aorto-left ventricular tunnel Congenital coronary artery aneurysm Intramural coronary arterial course Atrial septal defect, sinus venosus type Complete atrioventricular septal defect Congenital stenosis of the inferior vena cava Double outlet right ventricle Congenital pulmonary veins atresia or stenosis Rare cardiac disease Combined oxidative phosphorylation defect type 17 Diabetic embryopathy Holt-Oram syndrome Kidney tubulopathy-dilated cardiomyopathy syndrome Inherited isolated arrhythmogenic cardiomyopathy, dominant-right variant Genetic cardiac rhythm disease Partial atrioventricular septal defect Double outlet left ventricle Tunnel subaortic stenosis Aorto-right ventricular tunnel Abnormal origin or aberrant course of coronary artery Coronary ostial stenosis or atresia Atrial appendage anomaly Atrial septal defect, coronary sinus type Azygos continuation of the inferior vena cava Idiopathic neonatal atrial flutter Congenital pulmonary veins anomaly Naxos disease Familial isolated dilated cardiomyopathy Familial long QT syndrome Carvajal syndrome ATTRV122I amyloidosis Congenital pulmonary valvar stenosis Malposition of a coronary ostium Atrial septal aneurysm Congenital partial pulmonary venous return anomaly Rare surgical cardiac disease Congenital tricuspid stenosis Parachute tricuspid valve Familial progressive cardiac conduction defect Incessant infant ventricular tachycardia Non-familial hypertrophic cardiomyopathy Restrictive cardiomyopathy Subpulmonary stenosis Romano-Ward syndrome Congenitally uncorrected transposition of the great arteries with cardiac malformation Congenital patent ductus arteriosus aneurysm Abnormal number of coronary ostia Atrial septal defect, ostium primum type Inferior vena cava interruption without azygos continuation Mitochondrial DNA-related cardiomyopathy and hearing loss Costello syndrome Tricuspid valve prolapse Straddling or overriding tricuspid valve Congenital anomaly of the tricuspid valve chordae Familial sick sinus syndrome Heart-hand syndrome type 2 Hypertrophic cardiomyopathy with kidney anomalies due to mitochondrial DNA mutation Rare cardiomyopathy Tako-Tsubo cardiomyopathy Hypoplasia of the mitral valve annulus Encircling double aortic arch Interventricular septum aneurysm Persistent left superior vena cava connecting through coronary sinus to left-sided atrium Right superior vena cava connecting to left-sided atrium Tropical endomyocardial fibrosis Transposition of the great arteries and conotruncal cardiac anomaly Inherited isolated arrhythmogenic cardiomyopathy, dominant-left variant Mitochondrial disease with dilated cardiomyopathy Congenitally corrected transposition of the great arteries Supravalvular pulmonary stenosis Timothy syndrome Congenital pulmonary venous return anomaly Pulmonary valve agenesis-tetralogy of Fallot-absence of ductus arteriosus syndrome Familial short QT syndrome Congenital mitral stenosis Patent foramen ovale Congenital total pulmonary venous return anomaly Heart position anomaly Cardiomyopathy-hypotonia-lactic acidosis syndrome LMNA-related cardiocutaneous progeria syndrome Mesocardia Sinoatrial node dysfunction and deafness Ebstein malformation of the tricuspid valve Rare familial disorder with hypertrophic cardiomyopathy Inherited isolated arrhythmogenic ventricular dysplasia, biventricular variant Mitochondrial hypertrophic cardiomyopathy with lactic acidosis due to MTO1 deficiency
6.91720744999999951.492067199999994Interessengemeinschaft Das herzkranke Kind e.V. (IDHK)
Last updated: 23.01.2024